Abstract
Background
Infants and young children with established renal failure (ERF) require extensive treatment, including dialysis and kidney transplantation, putting huge practical and emotional demands on families and staff. The specific needs for support of families with infants requiring renal replacement therapy starting in the first few weeks and months of life are not well described in care guidelines.
Aim
To explore the care pathway experiences of parents of infants and toddlers with ERF being seen within one UK specialist paediatric renal unit, and to make recommendations for how to improve family experience.
Method
Semi-structured interviews were carried out with ten parents of six toddlers who had been receiving specialist renal treatment from birth.
Findings
Four main themes described parents’ experiences: Parents’ Emotional Journey; Practical Feedback to the Service; Communication; and Staff Interpersonal Effectiveness.
Conclusions
Incorporating recommendations based on families’ views into care pathways that meet the individual needs of families (framed by medical guidelines and models of helping) can help to improve parental experience of services. This will help alleviate parental distress, foster secure attachment relationships and encourage positive cognitive and emotional child development at a critical time. Routine monitoring of implementation and outcome of such a care pathway is essential to ensure ongoing improvement and quality of care.
Infants and young children with established renal failure (ERF) require extensive treatment, including dialysis and kidney transplantation, putting huge practical and emotional demands on families and staff. The specific needs for support of families with infants requiring renal replacement therapy starting in the first few weeks and months of life are not well described in care guidelines.
Aim
To explore the care pathway experiences of parents of infants and toddlers with ERF being seen within one UK specialist paediatric renal unit, and to make recommendations for how to improve family experience.
Method
Semi-structured interviews were carried out with ten parents of six toddlers who had been receiving specialist renal treatment from birth.
Findings
Four main themes described parents’ experiences: Parents’ Emotional Journey; Practical Feedback to the Service; Communication; and Staff Interpersonal Effectiveness.
Conclusions
Incorporating recommendations based on families’ views into care pathways that meet the individual needs of families (framed by medical guidelines and models of helping) can help to improve parental experience of services. This will help alleviate parental distress, foster secure attachment relationships and encourage positive cognitive and emotional child development at a critical time. Routine monitoring of implementation and outcome of such a care pathway is essential to ensure ongoing improvement and quality of care.
| Original language | English |
|---|---|
| Journal | Journal of Kidney Care |
| Publication status | Published - 20 Nov 2018 |
Keywords
- Infant, Parent, Care pathway, Partnership, Kidney disease, Chronic conditions